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Month: November 2016

It’s Thanksgiving day… and my kids don’t “get” what Thanksgiving is.So all the cooking I’m doing, they just think I’m cooking nasty crap they don’t plan on touching – like anything else I cook for myself. LolThey don’t get that today is different than others.So Justin had grilled cheese and Tyler had Cheerios. Jax had his veggies straws while watching Cars in the living room.Something that also didn’t change was Justin wanting to go to the park. A few hours after he woke up, he started asking.“Go to the park. Walk. Shoes.”“Not right now. Later. Wait.”Finally, it was later in the day and we had a few hours where we didn’t have anything that needed to be done or made, so we packed up and headed out.We turned down the street and I realized we shouldn’t have come.There were a lot of cars parked out front. I hate going when there are other people. But Justin was SO excited, I couldn’t just leave. We got out and Justin started off on his wandering around the back field while Jax and Tyler stayed in the park area.I noticed right away that people started staring at us. The girls on the picnic table would whisper and point towards Justin 50 yards away – walking around. The Mom pushing her kids on the swing was staring at him… then at Tyler carrying around a sippy made for a kid 3-4 years younger than him… and at Jax who was making noises rather than words – who looks more like a 4-5 year old rather than a 2 ½ year old. I tried to not let it bother me. Focusing on the boys. Helping Tyler climb the tree. No one said hi to us… or Happy Thanksgiving… I didn’t either, but I generally don’t talk to people who look at me like I shouldn’t be there. After a while, Jaxson took off towards the car. Their Dad went after him while I watched Justin and helped Tyler. More staring… more whispering. Jax started crying when he was bringing him back. We were only there for about 15 minutes… but Jax was ready to go home already. I had him get Jax in the car while I went to go get Justin.When I told him we had to go, he started crying and yelling… he was upset. Rightfully so… he wanted to come all day and end up leaving much sooner than we normally do. I held his hand and walked him back to the park. As we got closer he starts crying louder… yelling…So of course, the 20 or so people there start staring. I sign that we need to go home… that we were all done. Partly because I knew he couldn’t hear me with how loud he was yelling… and partly because then maybe the people who wouldn’t turn away, who kept staring would see that he wasn’t typical… that he was different… that he wasn’t spoiled… that he wasn’t being hurt… that they should MIND THEIR OWN FREAKING BUSINESS.But they didn’t. I hugged Justin and got him to the car. As I turned around to walk to my side… I saw everyone staring. So I waved with “Hi assholes – mind your business” face and got in the car. Ya know… our life, is normal to me… to us. What we do, how we live… how we go about our day. We laugh, love, learn, and in general are happy people living our life… Especially because I’m a stay at home mom who never gets out of the house… I’m in our own little awesome Autism Bubble where everyone who comes here knows and gets us… and if they don’t, they do eventually. If you criticize here, you get kicked out. It isn’t until I’m around “Typical” people… who prefer to gawk at someone upset or different, that I even remember our life is different than others. “Happy” Thanksgiving.

Can I just get all of the boys doctors all in one room and everyone can tell me how to raise and feed my kids all at one time? Being told over and over and over from different people who don’t actually KNOW my kids is getting EXTREMELY overwhelming… and annoying. *sigh*So, I blew up on one of the doctors at the Pediatrician’s office we go to today. They have many Doctors/Nurse Practitioners there… and he wasn’t the one we normally see, but was the one whom they set us up with to do his Health and Physical to be cleared for his Sedation Hearing test in two days. I didn’t mean to. I didn’t want to.I tried to hold it in as much as I possibly could… but as soon as he said that phrase… I just couldn’t hold it in any more. So he walks in. Says hi… starts typing.“And what are we seeing you guys for today?”I explained. He finished typing, grabbed some gloves and walked over to Jax. He starts listening to his chest and the first thing he says… before asking me questions about how he eats or how often… he asks if he has been tested for >>whatever<<… I said no, I don’t know what that is. “It’s >blah blah blah< when they can’t stop eating. They just eat and eat and eat.”I was like… seriously?!“He doesn’t eat a lot… or every often”“Huh”*keeps examining*He asks me very vague questions about his eating… I explain he really only snacks.. Mostly crunchy carbs… cereal and veggie straws. And again… without asking me why… without asking me what I’ve tried… without asking me if he has any actual issues with anything… he starts telling me about this little girl… Who was “quite big” and only two. And I’m just staring at him… NOT smiling… because I was pissed. This was NOT why I was here… and I JUST got to listen to all this crap two weeks ago at his Eval. He’s going on and on about eating… and all I can think was, Jax has been barely holding it together by this point. He just wants to leave… Then he started explaining how you start with meat, and once they eat that THEN they get fruit… then they get juice or a cereal…. And you do that all day… and that little girl didn’t eat the whole day… (In my head I’m telling myself… stay calm… stay calm…. Don’t freak out. You’re almost out of here… just keep nodding). Then he smiled at me… like he was trying to reassure me… and said “They’ll eat when they’re hungry. Don’t worry. He won’t starve!”That phrase… THAT FREAKING PHRASE!!!!!!!!!!!!!!!!!!!!!!!Sure… some kids WILL eat if you hold out… they’ve been shown from an early age that they don’t “have” to eat what they don’t want to. But for kids like mine… who will literally starve before eating something that they just can’t stand… it’s not going to happen. It doesn’t mean I don’t try and offer new foods… but forcing them… doing the whole “you’ll eat when you’re hungry” makes it worse… and makes them have an even worse attitude towards food. And it’s down right dangerous to offer that advice when you don’t know the kid. AT. FREAKING. ALL!!!I couldn’t… I lasted as long as I could, and I blew up… I cried… “I’ve tried that! I’ve got three Autistic kids with food aversions and sensory issues and I’ve tried that! It doesn’t work. What I’ve been doing has been working… when I tried that… it made it worse! I’m tired of getting crapped on about his weight every time I go to a doctor’s appointment!!”Totally shocked… he back peddles “I’m not being harsh… I’m just trying to ask questions and find out… I don’t know anything about you guys… I’m just telling you what’s worked… trying to help.” I wanted to yell: But you’re NOT asking… you’re TELLING!!!!“I can’t feed him anything different until I know what’s wrong with him. He’s had issues since birth!! I’m trying my best!” I explained more… Explained the tests we’ve done. Explained how I think he might have Celiac… that he gets severe diarrhea… that he screams when I give him different foods. He stopped talking… finished the eval… Jax and I both calmed down. Then he starts telling me to not worry… that kids like this get better. That kids on the spectrum just need positive parenting… and goes on about how to parent a child like him. I internally rolled my eyes so hard. FREAKING KIDDING ME!?!?! Is this the visit from hell???? NOW… NOW we’re not only telling me how to feed my child… you’re telling me how to raise him… without asking me how I do it… UGHHHH“I’ve got two other, older Autistic kids… I know what I’m doing.”“You have two other Autistic kids? That’s uncommon.”(soooooooooo you weren’t actually listening to me when I was upset… when I said I had three Autistic kids… do you think I was just kidding?!) He finally left… And I bawled my eyes out… It’s been an hour and I’m still freaking crying over this crap. I obsess… I worry…I stress…I FREAK THE CRAP OUT about making sure I’m being the best possible parent for my kids… in all aspects. Teaching them, loving them, caring for them, disciplining them, feeding them, therapy, exercise…. And some guy… who hasn’t seen my son in 2 ½ years (he saw him at 2 weeks old), and for maybe 5 minutes, is giving me parenting advice. I criticize myself enough on my own… I don’t need anyone else to do it for me. Everyone is telling me what I need to do. School tells me to work on this… therapists tell me to work on the areas they’re focused on… doctors tell me to focus on feeding and exercise… What you all want me to do… and expect of me… is all “advice”… I’m the parent!!! I get to FREAKING choose for my children what is most important right now.Plus… I’ve got THREE Autistic kids who all have therapists and doctors telling me what they all need me to be focusing on… There’s only one me… and I’m doing the best I can. Especially considering I’ve got my own mental and physical health I’m trying to deal with. *sigh*I just needed to vent this out or I’d end up crying about it all day.I planned on coming back to our page soon… but with all these doctors apts where I’m being beaten down… I don’t know when I’ll ever be mentally ready to come back… These migraines are killing me. Anyway… I Love and appreciate you guys. ❤

Something I didn’t talk about when I posted about Jaxson’s evaluation was what the doctors had said about his weight.Because I knew if I talked about it, I would have gotten upset and I wanted to be able to devote enough time to really write about it as I could. After they asked about his learning, understanding, words, sensory, they asked about his eating habits. And I’m sure that they look at him, chubby and look at me, Very Much overweight, and think that it’s obviously just me not having a healthy lifestyle. “How’s his eating?”*juggling Jaxson while trying to answer questions*“It’s bad”“Oh, he eats a lot?”“No.” I said it like I had a bad taste in my mouth.“He doesn’t eat a lot really, but his food preferences are very limited.”I explained… She responded,“Because his height and weight is as high as it can go on the chart” > Looking disapprovingly.“I know, but he’s also going to be 6’8’’… we don’t really go by charts that were made for people who were probably only going to get up to 6 foot. He’s going to grow differently.”“Yes, but whether or not he’s going to be 6’8’’, he’s still a very big kid.”That’s when I got upset. There are two versions of me when I get upset… well, there’s starting to be a third now that I’ve been learning to help control my emotions and let go of issues… But really… there are two.There’s me telling you off in your face (that one was more me in my teenage years).And there’s me crying. Because it’s overwhelming… and It’s hard for me to express everything I want to say, and it’s hard to defend myself when I can’t remember everything or when I feel like I’m being personally attacked or someone I love is being attacked. <–also when I have put myself in someone else’s shoes and feel they’re being attacked. Lol I cry a lot… which is why I guard myself and only allow people around me to be people who won’t hurt me or make me cry. I’m very selective of my friends. Which is why I have so very few. So right then, I felt like my parenting choices and my child’s weight was being attacked.Without asking me if I’d been to a GI or Nutritionist (which I have) or if I have gotten tests done (which I have) or WHY his diet is so limited… Or if I’ve tried feeding therapy (which I have) or tried tackling his sensory issues around his food issues (which I have)… she starts telling me that I need to watch his weight because essentially, he’s fat and he shouldn’t be. So I started crying. “I’m trying the best I can! He’s constantly moving. I keep him as active as I can and feed him as healthy as his diet allows me to!”“I’m sorry! It’s just we get parents in here with big kids and they can’t control them, and I don’t want to see that wi…”“My kids listen to me! I’m very strict and even if they don’t understand why I’m telling them to do something, they do it because they know they need to listen to me!”“I’m just worried that he’s going to get stuck in this rut and not want to eat anything besides what he’s eating now. It’s a lot harder for them to expand their food preferences the older they get.”>>I calmed back down… we talked… and I went back to my nodding and smiling and playing along. Because I HATE crying.And I finally got back to the state I was able to keep control of my emotions again. It just makes me SO angry when people look at me… then look at my kids… and assume we have a very unhealthy lifestyle because of our weight. Despite having a negative perception of myself, I ALWAYS preach “as long as we’re active, and eating healthy, then our weight shouldn’t matter”. It shouldn’t matter especially to anyone besides ourselves. I’ve got medical reasons why I’m as heavy as I am… but that doesn’t mean I don’t walk a mile every day, plus exercise and try to eat as well as I can. Oh, and I’m on the spectrum with food issues… my eating habits have actually improved since I was a kid so, maybe you shouldn’t generalize about something when everyone on the spectrum and everyone with SPD are different. I’m not a first-time mom let alone a first time Autism mom… I know better.My heavier set two, are the ones who are constantly moving and walking around. I almost never see Justin sitting. Tyler, the skinny one, who no one EVER gives me any crap about, is actually the least active and his eating is even worse than the other two. But because he “looks” healthy, no one cares… and I catch all kinds of crap about Justin and Jax because they’re fat. You can be skinny and unhealthy. You can be fat but healthy. “You cannot be healthy and weigh that much.”That’s funny because my blood sugar, blood pressure, heart rate, cholesterol… hint otherwise. Do I want to be fat? No. Do I want my kids to be fat? No. But I grew up in a “it’s okay, we’ll diet” type of environment. Diets aren’t great for long term. It’s also given me a horrible self image. I hate the way I look. Even when everything else is going good… I can look at myself and fall back into depression. “Then why don’t you do something about it?”I am. Every day, I’m doing something about it. Change doesn’t happen overnight. And believe it or not, having other people tell me I’m fat won’t hurry that process along any. If anything, it makes it harder for me to lose weight because I get upset and sad. Kind of hard to work on yourself when you’re depressed. And I’m DONE trying to lose weight quickly so I can finally love myself. Because when I was at my thinnest, I hated myself then too. I’m trying to love myself despite my weight. I’ve learned that what you look like shouldn’t matter. Your health is what matters. Being active. Eating as healthy as you can with whatever your issues with food are. Drinking water…Slow, steady, continuous progress is what’s going to give me a healthy life. Not diets or (diet)pills or self loathing. And you know what else?I’m going to pound that in my childrens heads… I’m going to fight and cry through every. freaking. appointment we have that they tell me that my kids are fat and need to lose weight. Fight for them to understand that they are amazing the way they are… that as long as they’re doing the best they can, that’s all that FREAKING matters. Because I don’t EVER want them to feel the way I do every time I look at myself in the mirror. #FuckYourBeautyStandards

Kreed’s World had a live video last night on AAC. If you’re interested in AAC/have a nonverbal or preverbal kid/student, I HIGHLY recommend you watch it here.She pointed out something that I’ve been TRYING to explain to Justin’s teachers for almost 3 years now… Babies are mirrored language for 1-1 ½ years before they’re really expected to speak it back. So why are we having our kids try a communication device/app a few times and say “oh well, he’s not ready” or “it’s just not working for us”? That’s what happened with Justin.

He’s in second grade. His very first IEP, I brought up getting him a device. One that its sole purpose was to communicate, because we had tried AAC apps before, but because he had already been conditioned to understand that an ipad/tablet was for movies… he would get REALLY upset if we backed out of it to help him communicate. We needed one in addition to his movies tablet. Later that year, I think they said they tried one with him for 3 days at school and he wanted nothing to do with it. “He just pushed all the buttons and walked away.”Three days. Could you image if it was like that with babies or toddlers?“Well we tried English for three days, maybe we should switch to german.” Lol Or “Well we tried. Your baby probably can’t talk. Or just doesn’t get it.”So they told me he wasn’t ready for one, and so his insurance wouldn’t cover it through the school or something like that… First grade I brought it back up. Same thing. “He’s just not ready.”This year I didn’t have to bring it up. “Last year you had wanted an AAC device, but we feel he’s just not ready, but he’s doing great with his PEC cards”….Yeah…. Because he has learned over the last few years that when he uses them to ask for something, he gets what he wants. You didn’t just stop after a few days. You kept pushing him to learn and understand and use them. So since Kindergarten, I’ve been trying to get Justin a device on my own.We tried to go through his speech therapist, but for some reason, things just never got pushed through. I saved up money to get our own tablet, and then another one broke and we had to use the new one as a movies tablet. We finally got to the point we had an extra one, got an AAC app, AACorn. It’s an AWESOME app… but because you start out structuring sentences, (and Justin’s receptive language isn’t great in addition to not “getting” sentences) he would get frustrated and just hit a bunch of buttons. Or go back over to the PEC cards. I kept trying, but it just didn’t click for him. So I tried with Tyler, but then a tablet broke and we were down one again. At this point… I was feeling pretty defeated. I shouldn’t have to struggle this hard to give my son a voice. Yes, PECS are awesome!!! And they’ve been working great.But they’re limiting. Jax likes to chew on them. LolThey disappear and they don’t actually speak for Justin. If I’m not looking, I can’t hear him speak. So when someone “nominated” me/Justin to Erin for the first of a few recipients to start out The Kreed Foundation, I was SO FREAKING excited. Because although this could take years of practice and learning for Justin to use his voice proficiently, it’s worth it. Everyone deserves to be heard. To be understood. To be able to make their own choices. And I want him to be able to do that, without my help at all… and starting him out as early as possible made the most sense to me. And I get that teachers/therapists can’t just hand out devices like candy. They’re responsible for making sure the T’s are crossed and the I’s are dotted…But for people (like insurance companies)… who have never had a problem being heard. Or not being able to speak… they don’t see or aren’t able to understand why I’m begging and pleading for a device for my son. Despite someone thinking he’s not ready.When I sent in his device from The Kreed Foundation, his teacher seemed excited about it, but the email I got from one of the speech therapists:“Last school year we mentioned he didn’t seem ready but she (his SLP) has been introducing him to a device we have this school year and he seems a little more interested. We will not continue with the device we have at the school but will begin to utilize his own device. If you have any questions please let us know. Thank you.”“A little more interested”.That’s funny…. Because he uses it quite a bit at home already and it’s been about a week or two, tops. Sure he’s really only asking for food and paper right now. But he doesn’t even go to the PEC cards any more. And I’m helping him say hello and goodbye to his therapists when they come over… Helping him understand Yes and No. Helping him say he’s excited about something when it’s obvious that he is. So that some day, he’ll be able to do it on his own. Of course he doesn’t seem all that interested.You have to start with the things he loves MOST and show him that using that device… his soon to be voice, he GETS what he wants when he uses it. Asking him if “this is a dog” yes or no? Probably isn’t going to get him too excited to use it. But you show him he gets skittles when he asks for them, he’s going to be pretty freaking excited about it. So, what am I trying to say with all of this?Teachers, Therapists, Doctors, etc… they’re amazing resources. Often they really do just want to help you and your child succeed. I LOVE them.But they do. not. and will. not. understand your child better than you do. Trust your gut. Fight for what you feel your child needs. If we had been working with a device since Kindergarten, who knows how much he would understand and be able to say right now instead of only just figuring it out. Thank you Kreed Foundation. Thank you for allowing us to be a part of Kreed’s legacy and thank you for finally helping Justin have his very own voice. ❤